Free to dream

While 25 children enjoyed a sleepover at the Peter Harrison Planetarium in Greenwich on 12 March, their mums and dads gathered together around a tea urn and shared stories and experiences of being the parent of a child with Type 1 diabetes.

But that night was unusual for many reasons. For several of the children, all aged between seven and 11, it was their first-ever sleepover. For their parents, it was the first time they did not have to wake their children to monitor their glucose levels. And for host Abbottt Diabetes Care, it was a chance to hear how its innovation is changing people’s lives – for the better.

FreeStyle Libre, which launched in 2014, is a unique glucose monitoring system that takes away the need for painful injections, but instead allows readings to be taken via the same technology as a contactless payment card. Group brand manager Nicola Wojciechowicz explains that the application is very simple and pain-free. Patients place the applicator at the back of their arm. They press down and up, and a filament the width of a couple of hairs is inserted. A round sensor, about an inch in diameter, is fixed on the skin above.

‘People assume the click is the needle [which places the filament under the skin] going in, but the click is when it is coming out. It has been inserted. The filament sits under the skin for 14 days,’ she says. The disc remains on the arm.

‘You only have to put the sensor over the reader three times a day, and it provides a 24 hour reading. The sensors carry on reading for eight hours.’ Most insulindependent diabetics conduct pin prick tests on average six times a day to check their glucose levels, but some people check as many as 15 to 20 times. The new product negates this need.

FreeStyle Libre enables them to identify patterns in their need for glucose, and identify trigger points. A traffic light system allows them to plot these. ‘People can download software and examine graphs in more detail. We certainly know of adults who have taken that data to their healthcare professionals, and said Let’s change this, or who have used it to create better management programmes,’ says Wojciechowicz.

Since its launch in 2014, more than 125,000 diabetics have signed up to the system, but it was only in February that it received its paediatric licence. It can now be used by children aged four and over. Abbott is also lobbying for the product to be offered by the NHS.

According to the International Diabetes Federation (IDF), around 140,000 children, from birth to 14, have Type 1 diabetes in Europe, and the UK, Russia and German have the highest numbers. Research conducted by Abbott Diabetes Care across seven European countries found that 67 per cent of parents of a Type 1 diabetic child felt the condition restricted their lives – that they missed out on sports and games (which could affect their levels), were sometimes absent from school and felt alienated from their friends.

‘Our research showed that 70 per cent of parents were exhausted by the condition and that 83 per cent felt that it had affected their family life,’ explains Wojciechowicz. ‘But we were also looking at another piece of research that had been conducted by the Diabetes National Network, which asked parents what kept them awake at night. Their child’s care at school was a top theme, but their first priority was night-time hypoglycaemic attacks.’

FreeStyle Libre allows parents to check their child’s glucose levels without waking them up, but parents wanted reassurances. ‘This is how our campaign came about,’ explains Fiona Lloyd, director, communications EMEA at Abbott. Working with agency Lansons, Abbott Diabetes Care created an integrated campaign, encompassing traditional and social media, about the product and what it meant for Type 1 diabetics. Is this the end of painful finger pricks for diabetics? asked the MailOnline.

The healthcare company then posted an invitation ‘to children living with diabetes’ to attend an educational sleepover at the Planetarium on its Facebook page, which has more than 43,000 followers. Each child could bring one parent or relative.

‘We were pretty overwhelmed. We filled the places within a few hours. We put all the names into a hat, and pulled out the lucky ones. There was a real spread,’ says Lloyd. ‘We had people from Northern Ireland, from all over the country. There was a real sense of buzz about the event; people were excited. They were posting pictures in their car on the way.’

As an entertainer amused the children, Abbott’s healthcare experts spoke to the parents about FreeStyle Libre and how it could change their lives. ‘The children were very excited,’ recalls Abbott. ‘Every few minutes someone would come into the room and say Can I have the parent of so and so because the adrenalin rush had changed their levels and patterns. It can all be handled, but just one change to a normal routine can have such an effect.

‘Lots of parents don’t allow sleepovers for this very reason. FreeStyle Libre can level this out, because they can see from the readings where they are heading. The comments that most resonated that night was I feel normal for once.

Each child saw 24 other children injecting insulin and snacking at different times. In their minds, that is what makes them different from their friends.’ Indeed, seven in ten children express negative feelings about diabetes, prompting 28 per cent of parents to fear it is affecting their mental health.

But what the event also did was to bring together parents who often turn to online forums for answers or to meet people with the same challenges. ‘We just sat around and chatted by the tea urn,’ says Lloyd. ‘People recognised each other from online forums. It was very powerful to see. Parents felt overwhelmed chatting with people who understood.’

She adds: ‘The purpose of the event was two-fold. It was very patient-centric. It was about us holding an event that brings a community together, to be able to experience a product at the same time as everyone else. And second, to say: we understand. We recognise the everyday challenges you face. An adult understands the disease. It is more fundamental for children.’

In recent years, Abbott has begun to recognise the power of the online community created by diabetics and their families. It embarked on a social listening programme of bloggers and tweeters, creating a stakeholder map that identified particular interests or activities.

When FreeStyle Libre first launched for adults, the company selected eight bloggers to invite to a breakfast in London. ‘We put the boxes in front of them and said Right, off you go. We received instant feedback. How clear were the instructions? How was it to use?’ says Lloyd. ‘There is nothing else that does this, so it needs to be seen to be believed.

‘There is a really strong community of diabetics online, and it is quite exciting to bring them together for these events. They might live at either end of the country and might never have met, but yet have had quite intimate conversations online about their condition.’

From the initial stages of FreeStyle Libre, Abbott involved end users, hosting focus groups and listening to feedback about the concept. The feedback shaped the development. When it was ready for testing, the company approached key members of the blogging community.‘A group of patients, under embargo, tried it out. The version that we launched a year later was different as a result of their help and feedback. It was much improved because of their real life experiences. It is a new way of working for us,’ says Abbott.

The company noticed that many of those testing the product had android phones. This prompted an initiative to create an app that could be downloaded onto an android phone, and used to scan the reader. ‘When we launched the app, LibreLink, we held a Google Hangout at night with our head of innovation in California to explain,’ says Lloyd. Abbott now regularly hosts Google Hangouts, often at night when the online community is particularly active.

‘We now talk a lot to bloggers and vloggers. Often they will be on a forum, where they will see something that someone has said, and say I don’t think this is true. Or they will think This is true, isn’t it?. And they’ll come to us, and go back and say I’ve just picked up the phone to someone at Abbott and confirmed this or whatever. They have the kudos and the credibility within the community that they are listened to.’ They can also enter closed Facebook groups, for example, where Abbott would be unable to engage.

But it is not a one-way street. Last year Abbott hosted Diabetes Exchange, a two day conference for about 20 bloggers, in Berlin, Germany. This year, the event was held in Stockholm, and featured about 30 bloggers. ‘They came from all over Europe,’ says Lloyd. ‘We gave them tips on how to improve their blogging and online presence. For example, this year there was someone very high up from Snapchat who gave them advice. We had a session on mindfulness, and we looked at different ways of thinking. A blogger from Ireland [who writes about cancer] talked to them about how she has grown her online following, and her experiences.’

It is only the final session of the conference that actually talks about Abbott Diabetes Care. But the company is also keen that people who might not want to commit to a regular blog can also share their experiences. ‘We have an Ambassador Programme, where more than 450 people send in their reviews, which might be a video or a small article.

They came back with their stories on how the product has changed their lives, from being able to go out and ride their bike to going on a family trip. These are normal everyday things which they now feel they can take advantage of,’ says Lloyd.

Now Abbott is going one step further. In June, it launched a patient innovation programme. ‘We went out to the community and asked if they wanted to come aboard and work with us on future developments. It’s a different way of working,’ says Abbott. ‘But we’re taking our clients on a journey.’